Christie Taylor Uncategorized

To “Be” or not to “Be”

At 53 years old I am a student. At 89 years old I will be a student. When I say goodbye to this world, I will be a student.

Yesterday, I was trying to help a student who has autism. I was kind. I gave this student squeezes, I spoke calmly; soothingly. This student’s aggravation grew.

I see a lot of “Be Kind” bumper stickers. “Be Understanding,” in my opinion, is where we need to “Be,” but that’s too substantial for a bumper sticker.

I looked to the teacher for advice with this student. The teacher explained that this student was working through inner thoughts; likely about an event that happened earlier at home that we knew nothing about. This student needed space to verbally work through those emotions.

This explanation clicked immediately in my mind. It made sense in the way some times physical touch and calming words are needed; while others space is required. But without that explanation, I don’t believe I would have seen this difference on my own. But now that I did, it was set in place in my mind and I will now be better equipped to help this student when another such happening occurs.

Every day, in this way, I gain new understanding. I gain new confidence and strength in helping give these students what they need to move forward.

One of my friends, whose son has autism, said she wishes, just for a moment, she had a special key to unlock his brain, walk in, take a look around, say, “uh huh,” then close his brain back up and move on with life.

Full understanding is an unattainable goal, but when we shoot for the moon, we can reach the stars; even if it’s one star at a time.

I’ve been asked more times than I can count stars, “How do you have such patience?”

I’ve used the word “patience” regarding Wil in my stories about helping him through “stuck” patches. But now, after having the few months of experience in this work that I’ve had, my perspective on “patience” has shifted.

Now, when I consider that word, “patience” is exercised when I don’t want to take the time to understand. When time is urgent, and Wil won’t go. When I want Wil to cooperate and he won’t. So I wait him out. But when I truly learn to read his cues; when I anticipate what may happen, when I try to take the “key” so to speak and unlock what is happening in his mind, that’s not patience. That’s being a student; that is cultivating an understanding. And when you unlock even a piece of understanding, the elation is beyond words.

To truly fill up the well inside of you, don’t just “Be kind.” Be desirous to learn. Be desirous to understand. Be desirous to be a perpetual student. Reach for the moon, and even if you grab one star, you’ll “Be” substantiality beyond what any bumper sticker can preach.

Christie Taylor Uncategorized

The Perspective of Time

Wil has grown so much in his 10th grade year, and I can’t thank Kristi Campbell, Hope Schook and Heidi Drake enough for that! For this fact, it gives me space to snicker when I read about a day like this:

10:05 Refused to work
10:08 Turned it around
10:25 Refused to work
10:30 Turned it around
1:50 Refused to work
1:54 Turned it around

Just last week, I worked with a paraprofessional that subbed for Wil in 1st grade while his primary para was on maternity leave. We laughed that the main topic of daily conversation then was how to get Wil out from under the table most of the day. At the time, though, it was no laughing matter!

But with time, collaboration & communication with caring educators, we’ve come a long way, baby!

We are on to larger concerns, as Wil is an adventurous guy; without fear/recognition of danger which will likely be on our radar for years to come.

So seeing these little bursts of stubborness that he can resolve in minutes, is him showing his personality in full force and finding the self-desire within him to turn it around for a better day — while giving his teachers a run for their money! And we wouldn’t want him any other way!

Christie Taylor Uncategorized

The Cure

My son will not play in the NBA; my son will not invent a new vaccine. My son will not design a software program nor manage your finances. My son will not drive a car nor drive a recycling truck.

But my son sang for nearly 4 hours on our drive up north without any music playing other than what was in his head. My son can put an impromptu Luke Bryan medley together faster and more expertly than Luke himself. My son knows the lyrics to well over 100 country songs. My son still jumps in puddles at age 16, finds reasons to laugh over things we’ve long forgotten, and has a joie de vivre that is enigmatically contagious.

My son is also frustratingly slow when he doesn’t want to do something, often coming to an abrupt halt. He will not be bullied, pushed or cajoled. He will do things in his own time; not mine and not yours. My son is hurt deeply when others try to force their timeline or opinions on him; yet he doesn’t hold a grudge against others. He quickly forgives, but he never forgets.

My son has his own opinions, idiosyncrasies, habits and preferences. My son, just like you and me, is fully human in beautifully challengingly ways. That is where we all can meet.

Wil does not have to win a pulitzer prize to prove his worth to this world. In fact, his having a disability gives us the opportunity to be better humans than we are. Wil, in his own way, is a pearl.

Wil was always a pearl; it was my heart that was the sand that needed to be molded and shaped.

Many do not take the time to look within their own hearts to see the sand; and this is required to take the time to understand my son. To understand Down syndrome. Our closed minds are the sand that we must mold over time and experience, and in that we find the pearl of his existence. And the beauty of that journey is we come to value what human life is about. It’s more than achievement. It’s more than habits. It’s about remembering the songs in our hearts before the sand gritted and obscured them.

I don’t want a cure for Down syndrome; I want a cure for a belief system. I want to turn sand into pearls within us. If we can create vaccines and information systems and recycling systems, can we not do this?

Christie Taylor Uncategorized

Something New

Wil and I were at the orthodontist’s office. He has a top set of braces; this appointment was about a bottom set to correct his underbite.

“As many kids with Down syndrome have a smaller upper jaw, the underbite is common,” the orthodontist said.

The commonality of an underbite in people with Down syndrome, I knew— what I didn’t know was why! I sat on a blue swivel chair next to Wil marveling at my casual lack of knowledge!

Moments after Wil was born I learned about hypotonia, as the nurse said Wil was “floppy” which is an indicator of Down syndrome. After 3 excruciatingly long days for Wil’s genetics test to prove what we already knew, I met with a geneticist. I learned all about those squiggly, little chromosomes. I learned about his stubby fingers, the space between his toes, his small nasal passages that would later cause terrifying stridrous breathing with days and nights at the hospital. I met with a cardiologist for the first year of Wil’s life and learned with relief that the little hole in his heart closed on its own. I learned about the commonality of clogged tear ducts that unclogged on their own soon after Wil’s first birthday. I learned when Wil was 6 months old he had hypothyroidism, about Wil’s tiny ear canals causing multiple infections, about his mild astigmatism and the therapies he would need and why he would need them.

I learned and learned and learned.

I continue to learn and learn and learn. What will life look like after high school? What post-high school programs are available to Wil? What job training is available to Wil? What social opportunities? What about girls? What about independence? What about college? And most importantly, what will Wil think about adulthood and how will I navigate that with him?

But on that blue swivel chair in the orthodontist’s office, I really didn’t even need to know why Wil had an underbite. I didn’t have to seek out any specialists, programs or community support. I didn’t need to create anything or join forces with others to create something. I just sat there and listened; and learned something casually new about my juice box-toting boy who is now turning into a man.

Christie Taylor Uncategorized

Let Us Embrace Our Vulnerable Population

In embracing our vulnerable population we embrace our own vulnerabilities.

We crave Love. Love is the base of all things. Love is survival. We crave, live and breathe for Love.

In embracing individuals that we previously misconceived as having lesser value, we find in fact their value is greater than ours as theirs is the truth-pathway to LOVE. In embracing those we do not fully understand; we must find within ourselves a deep patience and seek to view life in new and fresh way. It is in this way we find Love — a love deeper than we knew existed. A love that touches and speaks of God. We feel God and His Presence even if we are not religious; even if we are non-believers. Whatever we believe, we cannot deny what we feel. We call it Love. And yet it matters not what we call it. It only matters that we FEEL it.

Once we are touched by that feeling, we crave more. This Love lifts us, lights a fire within us. We find it hard to believe it was something we closed ourselves to. But we did not know we were living behind a closed door until our child with a disability; or our experience with individuals with disabilities opened the door for us. The blast of fresh air is what alerts us once we open our minds. It blasts us with a gust, not unlike a hurricane; it forces us out of our closed mind so far that we can never go back. We never want to go back. In fact all we want to do now is pound on closed doors in our desire that those behind the closed doors know this Love.

We see the fear, and know the difficulty to get past that fear. But once you feel the blast of fresh air in your face you cannot but want more of it, and want more of it for others. And so you advocate for your child, but it is so much more than equal rights and acceptance. It is a Love, a Love for all that lays hidden. A Love that is locked away inside of us. We are scared of it’s immensity. But in the fight for your child you release it. You must, for their sake more than yours. And you find in this unlocking a Love greater than you ever knew existed but it does exist in immensity all around you. And when you breathe it in fully it grows and grows and grows. There is no end to it, and though it is bigger than you could ever conceive, even a small slice of it breathes new life into. You cry in the sheer love that you feel. And you know you can never run out of that love because it is always there, it is bigger than anything your mind can conceive.

You must re-open yourself to this Love every day. Recharge yourself with it. When the doors start to shut due to habit or other’s actions — your child opens the door for you with a kiss on the cheek, a simple gesture, or a silliness. And when you try to describe this type of grand simplicity that has the power to open a door, those behind closed doors see only the simplicity of the gesture, as they have not opened themselves to the grandness. They refuse to open the door to this Love, staying in a sheltered space they know. Fully unaware that the immensity of Love is available to them if they only unlock the door. But when we don’t know, and what we only know is behind the door there is great security in that. There is great control in that. And we think we are thriving when really we are not. We have created a life that feels good behind the closed door. Even when it doesn’t feel good, it is what we know — how terrifying to go outside of what we know.

When we spend time to truly know and understand our vulnerable population, oh, what LOVE. It is open, it is free. Our children never tire of opening the door; it is their nature. It is on us to open ourselves to them.

You will know when you feel the Love. This Love is yours, it is all of ours. It is in endless supply. Let us circulate it. Let us ventilate closed doors. Let us embrace our vulnerable population.

Christie Taylor Uncategorized

HOW WE BEND

Today Wil and Manny went bowling. Both are teens with Down syndrome. Manny’s mom, Laura, and I share frequently about our plans, thoughts and concerns for the future. Thoughts about our boys as they age out of the school system; after friends have moved on to college, to jobs, to get married. How will our boys adapt to the change? What programs are available now and in the works for the future? And of the programs available, are they a good fit for our boys?

Last night my friend, Cheri, who’s son CJ (who you may know from his weather reports—WCJR weather) called me. CJ is graduating high school this year and also has Ds. Cheri and I shared our thoughts and plans for our boys’ futures. Cheri is always a step ahead of me in raising CJ, and I learn greatly from her experiences.

Not everyone has a teen child with Ds. We must actively seek one another out, actively seek out programs, and discern if what’s available is the appropriate fit for our soon-to-be adults. In fact, just today, Wil had an interview with a summer camp I’ve tried for years to get him into. Wil is ready for an overnight camp, but not without an aide. Just going to a typical summer camp is not an option for him. And that is the case for many people with disabilities; thus the long waiting list. The interviewer said Wil’s a really good fit, but spaces are very limited. She was wonderful, we connected immediately, and said she’d do what she can for him to get in.

Recently talking with my friend, Vanessa, who has a teen daughter w Ds said to me, “You bend for the ones you love.” That statement delivered great clarity to me. It makes sense of what connects me to a camp counselor I just met on a 30 minute Zoom meeting, but knew her innate understanding immediately; and also what connects me, on a deeper level, with my friends. We bend to create understanding and opportunities for people with disabilities. We bend together for the ones we love.

As Vanessa spoke those words, I visualized trees that stay closed in, protecting the roots they know, refusing to bend. Then I visualized trees firmly rooted in love, but with branches reaching, stretching, bending, some almost impossibly yet never breaking, open to receive the sun along with the rain — both of which serve to strengthen them.

If you were a tree, what kind of tree would you be? 😉

Christie Taylor Uncategorized

I Feel Good!

I remember, when Wil was a brand new baby, I walked into my first Down Syndrome Support Team (DSST) meeting. Young kids with Down syndrome were running around playing like young kids do. Everything was so normal, and yet it wasn’t to me, because all these kids had Down syndrome. I went home, though very supported by the parents, crying my eyes out. My mother-in-law, who was at our house watching the twins (who were not even 2 years old yet), asked how it went. I broke down crying again. My emotions felt too big to process.

Yeaterday, at a DSST teen event, our kids acted like…you guessed it, total teenagers. They went between competitive games of pool, foosball, and Apples to Apples, to being cool and aloof. We finished the event with a dance party, and our teens got down like James Brown! I went home floating on a cloud.

What was the difference between then and now, other than age? Its the same, but also not. And in the process of learning the “not” I fell in love with the whole.

And when you can embrace the whole, there is an elation with a depth to it. Kind of like a James Brown charasmatic scream 🙂

I feel good!! Oww!!

Christie Taylor Uncategorized

Under-where?

I made Wil’s breakfast and busied myself in the kitchen awaiting Wil’s typical wide-armed entry into the living room with a hearty, “Look at me, Mom!” (He takes great pride in his clothing selection each day.)

“Oooo, fancy!” I’ll reply. This morning, however, just enough time had passed to suspect something was wrong.

“Do you need help, Wil?” I called out from the kitchen. I received no response.

I walked into Wil’s bedroom. He sat on the floor, shoulders slumped, still in his pajamas. The underwear drawer hung open in front of him.

“Wil, you have underwear in your drawer.” I picked up a pair.

Wil put his hand up. “No mom.”

“What’s wrong. Do you want a different color?”

“My new underwear, mom.”

“Oh, I have some in the dryer. I’ll be right back with them.” (I recently bought Wil new bamboo-based underwear for his skin sensitivity.)

I returned to Wil’s bedroom and playfully tossed him 2 pair of underwear in different colors (I was trying to keep the mood light. I didn’t know if this was simply about underwear or if it was a deeper problem.)

“Two pair!” He exclaimed as he caught the underwear. I relaxed. It was just about underwear.

“Hey Wil, thanks for telling me what was wrong. That way I could help you. See how easy that was? Next time, just come and tell me what you need. If you tell people what is wrong, then they can help you. Otherwise we just don’t know, and then we don’t know how to help.”

A short 2 years ago there is absolutely no way I could have had this conversation with Wil. He would have stayed on the floor without a word. His shoulders would have slumped further, and any more words from me, no matter how reasonable or helpful, would not be reasonable or helpful to him. More words would drive him deeper into his frustrated state.

A short 2 years ago I would have sat next to him, and maybe even silently cried because we had so many such mornings. Like many teenagers, hormones and body changes put him in challenging moods, and with a communication barrier I had to guess at the reasons for his upset.

Different underwear than what was in his drawer would have been the last on my checklist of guesses. Because school was challenging for him at that time, my mind would have leapt to problems at school. I would have become increasingly upset and sad for him. I then would have texted his paraprofressional (who is wonderful!) and probed her for any clues as to what may have been setting him off. We both would have poured over recent events trying to discern what was wrong so we could unravel it for him.

And yet, for all our surmising, the solution was a different pair of underwear.

And so, this very morning, I was the happiest mom on earth. I had a conversation with Wil, and Wil responded back to me. His back step of getting stuck with lack of communication was also a forward step in expansive conversational communication.

Over and again, Wil reminds me that what seems simple on the surface often is not; and what seems complicated on the surface often is not. And that no moment — be it simple or complicated — is to be taken for granted.

Christie Taylor Uncategorized

House of Cards

Most of us don’t choose to be caregivers. Then next thing you know, you find yourself standing on a house of cards.

Last night a friend was at a neighboring table for dinner with her husband and another couple. After they had eaten dinner, the other couple left. As our friend tried to leave, her husband refused. As he’s endured multiple severe health issues, life circumstances now have our friend in the dual role of wife and caregiver. He wouldn’t leave because he’d forgotten he’d eaten dinner, and thought his wife was trying to make him leave before eating. Try as she might to convince him he’d already eaten, he sat steadfast.

Though the differences are many, I saw many parallels in Wil’s determination not to be swayed and our friend’s husband’s determination. I intimately knew the tears in her eyes. I felt her frustration not of just that moment, but of all the moments built as carefully, patiently, diligently and lovingly as a teetering stack of cards; that in just one moment, comes falling down.

After the cards collapse a number of times, you just feel so tired of it all. All of those cards, all over the floor, and one by one you must build them back again. Sometimes, it goes smoothly, and sometimes that one card keeps falling so as it’s impossible to build on it.

I knew this cycle with Wil. The only two solutions our friend had at this point were to wait him out until he decided for himself it was time to go (which could be hours) or a fresh voice to break the spell (as the caregiver’s voice is heard so many times, pleas can fall on deaf ears). It is a new face, or a new voice, that often breaks the spell.

My dad was the one who stepped in, and I looked at our friend, our eyes connecting in a knowingness. It’s hard, and no one asked this kind of hard, but there is so much love here, so much that we’d do for our loved ones, that makes the hard parts both more challenging, and yet strengthens us at the same time. And when friends step in to help, the wobbly card steadies and we can start building again.

Just before the holidays, a member at work shared with me that she was bringing her mother, who has dementia and lives in Florida, back to Michigan for a visit. She said, “Though Wil and my mom have many differences, I now know how you feel when you fly with him. You just don’t know if they will cooperate or not, so you prepare the best you can. Then you find out there is always something you didn’t think of, and things fall apart. And other times things go so smoothly that you wondered how you worried at all. You just don’t know.”

While visiting my parents in Florida, Katherine, Elizabeth, Wil and I went to the Naples Zoo. Wil gets hot easily, so we went on the coolest day. When he grew tired and too hot, I found an area by the zebras which was shady and he really enjoyed. Though Wil is very capable of walking the zoo for the day, its his building overstimulation with the heat, with the crowds and with the animal noises that eventually get to him.

Every year I find ways to keep him at the zoo longer. Every year I learn from the previous year. But I never let him sit it out. Because every year Wil learns how much more he can do. I’m fortunate that the twins can walk off to enjoy the zoo on their own, and circle back to Wil and me, instead of stopping every time Wil and I do. They know how this works. We build the house of cards together.

When Wil finally hits a wall after stops and starts, he still has to make his way back to the zoo entrance. As this zoo is near my parents’ home, they are fortunately available to pick Wil up when that “wall” is hit. I sit with Wil as long as he needs me to, as his will to walk to the entrance is his only way out.

We don’t choose our situations; they choose us. But we do choose how to utilize the time within our situation. We do choose whether to keep building, even after the cards have fallen. When times get hard, locking tearing eyes of understanding mean more than words could ever convey. They give us strength to build again and again; as many times as it takes.

Internal victories are what carry you and lift you through the hard times. Even 30 more minutes at the zoo on this visit delivered an internal joy with iron-clad strength—a strength and joy that will not fade with time or circumstances. I can build a million cards with the super-sonic strength of 30 extra zoo minutes many take for granted.

Caretaking is unpredictable and challenging, yet it brings out our best, and brings us all together if we allow it to. It’s what humanity is all about. (But if you challenge a caretaker to a house of card building game, they will mercilessly kick your ass.)